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Saturday, September 26, 2009

Jaxson is doing good. They extubated him last night to bi pap. They took him off the bi pap this morning and his been fine. We came back up to the floor today, and we'll stay here until a care conference Monday, and probably a trach next week. The care conference is about whether or not to trach him, but ENT is already saying thats what needs to be done. So I'm pretty sure thats where we are headed.We continue to have problems with our cardiologists like we always do. They didn't do what I thought they were going to in the cath. I thought he was going to measure his pressures and start some meds. But when I asked him what his pressures were he said that when he measured them they were lower because they had already started nitric. So we didn't even get a number on his pressures are going in. My cardiologist is now saying he thinks the swelling in his face is because he is on the ketogenic diet, which is an all fat diet.

Again, OMG

He is just pulling things out of his a$# to try to explain things. You would not believe how frustrating this place is to me. The only reason I still come here is because its all we have here. The only pediatric cardiologists in the whole state. We are now looking into doctors in California, since we want to be there anyway.I mean, he's been on this diet for two years, the swelling came on in a matter of days, and only in his face and chest. His legs are as skinny as they were before. Plus its not like just eating junk food all day, it puts your body into ketosis, so you burn fat instead of sugar. Its not a fattening diet.Anyway, I didn't see ENT today. But I guess he talked to the cardiologist and still thinks the trach is the best thing. I really hope this care conference is productive. I hate when I have to get pissy with people.Daddy and brothers went to the buddy walk today. He couldn't believe how many people asked about Jax. People that he didn't even know, how crazy. I will post pics when I can.

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comments:

What a strong little man. I sure hope your care conference goes well and you are pleased with the results. Don't you wish they would listen sometimes...Doctors can be frustrating!! Glad some of you made it to the Buddy Walk for Jaxson...he sure has a lot of fans out here!!

He had Parker sedated differently than he usually did. Then when he showed up being very acidic and the anesthesiologist wanted to change out Parker's trach for a cuffed trach because this trach was leaking so much, Day said not to because he wanted to see the worse case scenerio.

Now Day says that his blood being so acidic could have shut down his veins messing up the results.

He wants to add a statin to Parker's meds and then do another cath this time sedating him the same way he had his first two caths instead of this new way with anesthesia.

A friend of mine recommended a PH expert in Boston. I'm going to talk to Day about doing a virtual consult with Parker.

NO leaking valves.His heart pumping great and looking strong.His BNP great.His EKG showing improvement two times in a row. And NOTHING is any better.

As a matter of fact the actual values were the same as the last time we cathed.

EXCEPT for the acid levels. They were WAY higher this time. And he's been diagnosed with medibolic acidity before. Due to the tube feeds. Which we just upped.

It wasn't a good time.

Just so you know. At first Day wasn't on board with Parker's trach either. It took him a minute and then he was.

Oh Lacey, I'm so relieved he's doing okay! I've been checking and checking and was worried. I'm so glad he's doing as well as he is. how are YOU doing? RUnning on adrenaline, probably. Thinking of you and your family. Glad the rest of the gang got to do the buddy walk!!!!

I know I don't comment often, but I read your blog faithfully. I'm sorry you're dealing with frustrating doctors who are not on the same page. You know that little boy better than anyone, so trust yourself and your instincts.

As far as his airway, I can't offer much since Ava has always walked a fine line as far as whether or not to trach her.

I'm praying for your little man. When he's out of the hospital and things have settled down, I'd like to donate some fabric for more blankets. You are so sweet to make them for these amazing kids.

We were rooting for Jaxson's team at the Buddy walk! Carter wore his picture proudly on his shirt... so cute! I hope he continues to stay strong. So sorry you are frustrated. I hope things get resolved.

So glad he came through ok...he is a true warrior! So sorry for the never-ending questions and issues. I am frusterated for you! :) Not sure if you called back today my phone died. We can catch up tomorrow or Monday. Good to hear your voice and the strength it carries! Hang in and I am ALWAYS here if you need to yell, laugh, cry, vent, scream, cuss, etc! :) Love you guys!

Just glad to hear that Jax is doing ok right now, . But I feel your frustration and desperation to get some answers and that too the right ones, doctors can be the most frustrating lot to deal with and sometimes one wonders if they even care. Hang in there and listen to your inner voice always. Praying for Jax and for good news, which WILL happens don't worry.

You will know me as "Megan's Mom" and I wanted to thank you very sincerely for your kind birthday wishes which you left on Keaton's blog. It means so much to me that despite your own daily challenges, you made the time to leave the meassage. I am truly humbled by the greatness of your character.

Know always, Lacey that we keep you and courageous Jaxson in our prayers daily. Keep your faith strong and continue to trust your own "mother instinct".

I think you are an amazing family, serving to inspire others in numerous ways. May God enfold you all in His arms and give you strength, courage, faith, hope, love, peace, acceptance, understanding and wisdom.

So happy Jax is doing good and already off bipap. Way to go little champ. Prayers that the docs will listen, some can be so horrible. Junior sees a cardiologist just once a year but he is awesome(we are in CA).

Lacey, So glad to hear he is doing pretty well. I am amazed at what our little people can make it through. We as adults probably wouldn't do half of it before saying we were done and these little guys take it all with stride. We will keep praying for Jax that his recovery keeps moving forward. We will also pray that if there is any other options before a trach that those might be tried. Lastly, we will continue to pray for you. We feel your frustration when it comes to doctors. Our most frustrating times have been when Isabelle was in the hospital, but overall you wish you could just give them a reality check slap and ask them to treat our children how they would want some doctor to treat their own. Hang in there.

Read about our adoption journey here!

Jaxsons story

About Me

Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects,pulmonary hypertension,severe reflux,sleep apnea, and a hypoxic brain injury that resulted in severe siezures.This is his journey.